Christian Farman Britt-Mari Banck Presentation Christian Farman Registered Nurse Technician NDT President of the Kidney Association of Jönköping/Kronoberg Counties Patient/customer/caretaker/client since 1997 Kidney transplant 2,5 times Peritoneal dialysis 1 year in 1999 Self-hemodialysis 1 year in 2005
Supernurse Britt-Mari Banck Reg. Nurse and Deputy Chief Nurse at the Dialysis Unit in Jönköping Dialysis nursing experience for more than 20 years Developed an unique learning model together What Does it Mean to Receive Dialysis Treatment in Chronic Renal Failure? Life supporting treatment Dialysis treatment at least 3 days a week It takes 4-5 hours a day Food restrictions Fluid restrictions Extensive pharmaceutical treatment Limitation in social life Separation from family and work
My Situation Back in 2005 Relapse in renal failure In need of dialysis treatment Anemia/Uremia Symptoms I Put Demands on the Health Care Provider/System Learn to manage my own dialysis treatment Optimal individual dialysis treatment That the health care provider was listening to my needs Daily dialysis or at least 5-6 days a week To be fully involved and have influence over my dialysis regime and treatment
and Then Proceeded
Another Step Towards Independence and Then: Did it by Myself!!
What I Learned When I Made Demands on the Health Care System Ability to influence my life situation Anything is possible with right guidance Meaning and Sense of Coherence Involvement and better treatment outcomes Quality of life Health and wellbeing Gainful employment despite extensive treatment Everybody can do it!!
The Self-Hemodialysis Staircase The staircase is not static. Changes can go both upwards and downwards depending on the patient s condition and motivation. Training and information is provided along the entire staircase. Home-HD Manages everything without supervision. Manages the machine independently. Inserts and withdraws needles/ manages CDK with some assistance. Cleans up. Manages the machine at start-up and conclusion with supervision. Gets help with inserting needles or handling the CDK. Cleans up. Manages alarms. Dresses and primes the machine at start-up, with some supervision. Write protocol. Visitor at the Self-Dialysis unit, receiving information about selfdialysis. Out-patient clinic Emergency care Peritoneal dialysis Assisted HD The Work Load Staircase SHD How much staff is needed for different work loads? 3 points 1 nurse/2 patients? 2 points 1 nurse/patients in training (Yellow steps 1-2) 1-2 points 1 nurse can attend to several patients (Yellow step 3) Dress the machine Primes, sets the table 2 3 points 1 point 1 nurse can attend to several patients (Green steps 1-2) 0 points 2 nurses/11 patients (Green step 3) 4. Continuous training Drawing UF Medications Kt/V Blood volumeassessment Blood pressure 3. Entirely independent. 0 points 2. Yellow steps 1-3. Access by themselves with supervision. Treatment without supervision. 1 point 1. Yellow steps 1-3. Help with access. Supervision of treatment. 1 point 3. Training 1 + 2 + Only supervision. Learn to insert needles/use CDK 1-2 points 2. Training 1 + start/ conclude the dialysis with assistance/ supervision 2 points 1. Training Dress the machine. Prime, set the table. 2 3 points Guest for 2 weeks Assistance with the HD. Writes protocol, takes blood pressure. 3 points Assisted HD Help with everything around the dialysis 4 points
Margaret Newman s Theory Health also in the presence of disease. Higher levels of consciousness (theoretical and practical knowledge) Nurse = Coach; source of knowledge Gives necessary knowledge/creates possibilities for reaching the next level of consciousness Form new life-patterns An active patient who takes responsibility for her/his choices
Responsibility? Function Biology Satisfaction Cost Source: Nelson EC, Mohr JJ, Batalden PB, Plume SK. Improving health care, Part 1: The Clinical Value Compass. Jt Comm J Qual Improv. 1996 Apr;22(4):243-58.
Function Biology Satisfaction Cost Source: Nelson EC, Mohr JJ, Batalden PB, Plume SK. Improving health care, Part 1: The Clinical Value Compass. Jt Comm J Qual Improv. 1996 Apr;22(4):243-58. What do we Measure? ESAS (Edmonton Symptom Assessment Scale) Quality Indicators: Blood count, Kt/V, S-Phosphate, Corrected S-Calcium, PTH, Accesses Decreased use of medication, e.g. EPO, Blood pressure agents In-patient admissions
Success Factors Patient participation! Build trust Structure Be attentive listen to others A sense of security and comfort Humor Should we call this unofficial labor.? Do you know what s best about this job? You can be lazy without it being noticed!
What Do We Gain Through Patient Involvement? What Can the Health Care System Learn? Meet the patient based on his/her knowledge and conditions See the person beyond the patient Listen to the patient, I mean LISTEN to the patient Dare to try something new; think outside the box. Don t focus on problems Begin to discuss hierarchies in health care Work with the culture It s not about the age issue
Lets dance together!! Thank you for your attention! Contact: Christian Farman E-mail: christian.farman@hotmail.com Britt-Marie Banck E-mail: britt-mari.banck@lj.se